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They have got it right about the need for rest. The rest of it - dietary changes - low histamine, gluten free, microclots, cold water therapy, red light therapy, are all anecdotal, and presented here as helping people, but not curative. Is it quackery? It's certainly not evidence based, and...

I'm lost for words. The insensitivity is breathtaking.

Number of patients First visit 175 Second visit 92 Third visit 43 How can they conclude anything about recovery rates when only a quarter of the sample are included?

On this aspect of AfME's work, the recent correspondence with Sonya over the care plan template fiasco may be of relevance. I have just posted Sonya's reply to my follow up letter on the thread...

I had the following reply from Sonya on 14th September. Sorry for not posting it earlier. I will reply briefly thanking her and explaining I don't have capacity to contribute further to AfME's materials but others on the forum may be interested.

I have never been able to do any sort of fitness or strengthening regime since getting ME/CFS because fulfilling my daily responsibilities and needs uses up all my capacity and more. I was encouraged to do some very simple horizontal brief pilates exercises many years ago, and just the few...

Do rheumatologists (or some other specialism not neurology or psychiatry or rehabilitation medicine) have a separate body that could be approached with a view to asking their leadership to adopt ME/CFS as a condition under their umbrella? The psychiatrists took 'ownership' of ME/CFS 35 years...

As far as I know the big reveal of his discovery he promoted on social media was presented in the paper discussed on this thread: Preprint Increased circulating fibronectin, depletion of natural IgM and heightened EBV, HSV-1 reactivation in ME/CFS and long COVID, 2023, Liu, Prusty et al

For those who don't have access to Apple podcasts, the BBC World Sevice lists all its podcasts here: https://www.bbc.co.uk/programmes/articles/2SHPBt3FsvmhCglB60f86CY/podcasts-from-bbc-world-service

Thank you. I think we need to coordinate it privately. I haven't discussed with the committee how we do this. I'll add your name to people interested in helping.

We have that in mind, though currently don't have the capacity to organise it quickly.

:rofl::banghead: Thanks, as bad as I expected.

It might be interesting to try it on a rubbish paper like PACE or the Larun Cochrane review. See if it picks up the flaws. https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/fulltext https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub8/full

I've just re-read the MEA article introducing this version of the PASS questionnaire, quoted above. This makes it clear, along with the title of the whole project 'clinical asssessment toolkit' that it's not primarily about medical care, it's about 'assessment'. So what I'm seeing here is...

I'm not impressed with those 2 transcripts. I may be missing something, but what's the point?

It occurs to me that use of a questionnaire like this by a therapist is a way of distancing themselves from the realities of the pwME's life. Especially if they are seeing pwME in groups, and not spending time in the group listening to individuals' situations and helping them resolve real life...

You're right on all counts. I reacted in my rush through it yesterday more positively simply because it's an improvement on the on the original version. I think back to the boxes I ticked yesterday just in order to be able to paste the questions here. My answers, though honest, we're...

They could have said all that 100 years ago.

There are still significant problems with this, such as the meaningless question 12 about what level of activity triggers PEM, with no benchmarks for what is strenuous or mild etc, but it's much better than before. At least this time it's about PEM, not muddling together all activity after exertion.